Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma

Abstract

When high-grade gliomas recur, patients, their families, and clinicians face difficult medical decisions. There is no curable treatment, and the treatment options all come with a risk of complications and adverse effects. The patients are often cognitively affected, and they need tailored decision support. The objective of this study was to develop a patient decision aid (PtDA) targeted at patients with recurrent high-grade gliomas. Based on existing knowledge and the International Patient Decision Aids Standards, the PtDA was developed through an iterative process. The PtDA was alpha-tested by potential users to assess its acceptability and usability. The development team comprised three clinicians, two patients, two family members, and a researcher. The fifth version of the PtDA was submitted to the alpha test. Eleven patients, nine family members, and eleven clinicians assessed the PtDA and found it acceptable. Three changes were made during the alpha test. Most participants perceived the PtDA to prepare patients for decision making and improve consultations. The involvement of potential users was emphasized during the development and alpha test process. The PtDA was assessed as useful and acceptable by patients, family members, and clinicians in the decision-making situation of recurrent high-grade glioma.

Large language models as decision aids in neuro-oncology: a review of shared decision-making applications

“…Emotions such as fear, anxiety, and overwhelming uncertainty can prevent them from actively participating in SDM discussions (Hermann et al 2016 ). Recent studies by Leu et al 2023 ; Sorensen Von Essen et al 2022 underscore the importance of not only medical guidance but also emotional support in the neuro-oncology context (Leu et al 2023 ; Sorensen Von Essen et al 2022a ). Creating a safe environment for patients to voice their fears and concerns is vital in alleviating the burden of these emotional obstacles (Heyhoe et al 2015 ).…”

Treatment of Adult Gliomas: A Current Update

“…Neurological defects can delay or hinder subsequent treatment, such as radiotherapy or chemotherapy, which are also critical treatments, especially for high-grade glioma, which is not controlled with surgery alone [ 12 ]. Except in emergent cases, shared decision-making with patients and caregivers should be considered to discuss the anticipated deficits and decide on the surgical extent before surgery [ 13 ].…”